Bottle o Tamoxifen
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Not only does 81mg aspirin help prevent clots that can lead to stroke but it helps prevent colon cancer.
Check out the talk I went to late last year. Link in that post in here.
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interesting article on a test for identifying individuals with genetic risk for clot formation as well as recommendations to reduce overall risk regardless of taking the test
FWIW, my MO said 1 and done. Developed clots, went on anti-coagulants and was advised to discontinue tamoxifen and not restart. One of the theories on why clots happen is that the estrogen that is no longer being up taken at the cellular level builds up in the blood and the liver can’t clear it fast enough (this is why some women on tamoxifen have off the chart estrogen levels when checked on a blood draw). That excess estrogen causes the blood cells to “get sticky” and clots can form. Taking an aspirin a day can help them be less sticky, but continuing a medication that you know is promoting clots (if in your case you’ve already developed 1 on tamoxifen) even with an anticoagulant on board is likely not a good thing as we don’t have any studies showing 1) that it works and 2) at what aspirin/anti-coagulant dose does it work.
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everyone needs to go over their profile and risk factors with their mo. High risk people like me who can't tolerate the ses of AIs, T is all that's left.
People who are doing well on any anti hormonal are mostly gone from the boards. So there is this tilt. All meds have possible ses. Many same or worse than this. You need to carefully evaluate your situation. Stage 1 folks can make the no thanks decision easier than stage 3, so take that into account. Know your personal risk for mets and the common ses with any med you are looking at. Maybe some day there will be a better med. At least we have this choice. Other cancers don't.
T can decrease risk up to 50%. Of course no guarantee it will even work as with all meds, we are all different. That's why there are different meds for the same thing. Add weight control, exercise, diet and you up your chances not to recur or mets.
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Adding onto what Rosabella said about stage 1 vs stage 3, someone in their 70s may have an easier time of saying no thanks to the anti hormonal dude to SEs than someone in their 30’s/40’s/50’s. The biggest problem is there is no way to definitively predict who will have what side effects and how severe they will be. Everyone’s experience is different because everyone’s body is different. The only way to know how you’ll respond, what SEs you’ll experience, and how severe they’ll be is to start taking the tamoxifen or AI.
* I forgot to note above that when I discontinued the tamoxifen I had an oophorectomy (high risk for ovarian cancer from genetic testing so they were going anyway, just a matter of time) and started an AI with minimal SEs so far. Tamoxifen isn’t the only game in town if you end up with unbearable SEs or ones you can’t afford to repeat like clots.
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What confuses me about Tamoxifen is when do people tend to have side effects? Can you not develope them until months or even years after starting? Can some go away and new ones appear?
Also, it's hard for me to know if something is a tamoxifen SE or something else. For example, I've always had seasonal allergies, but this year I have pain/tingling in ear and jaw and cheek area. I've assumed it's alkergies, but them I google a and find others attributing the same thing to tamoxifen.
It's annoying and tiring.😳.
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vl22, ses can develop at the start or later on as everyone is different, and also can change/come and go. Many sail through these meds for their entire time on it be it 5 years or 10. Like with any other med, food (allergies), there is no way to know until you take it. Every med has long lists of possible ses. If 1 person reports something, they have to list it. So its easy to go omg! While important to evaluate and know POSSIBLE ses, know many don't get any from said drug, any drug. We'd all be saner if we knew what ses we would get, or none, and to know if meds are working. We always have some estrogen even if you yank your ovaries out. Other places produce too even when you are deep in menopause at 80. So the goal will never to try and hope for 0 but to get as low as you can esp if your er is high. Mine is 95. No way will I stop T. I have a lot of fatigue, hair loss, achey joints. But I manage without taking anything for them as im not into popping pills unless i really must.
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Rosabella- I hear you on the pill popping thing. I rarely take anything if I can avoid it. It’s like I’ve grown an aversion to pills after going thru it all. I also find the simplest medical appointments a grind....walking in the building makes me feel yucky (can we spell PSTD?) I attend all appointments, take my meds & vitamin d like a good girl but somewhere in my mind I get a feeling that I’ve done my time and should be free of having to continue face meds & appointments.I guess in a perfect world I’d get that.
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Egads- thank you for your post! Your wording just made the lightbulb go off in my head that I suffer from PTSD from my first go round with cancer. It was 30 years ago but I still have issues with walking into the wing they used for chemo back then (now it’s an outpatient minor procedure wing),the smell on that side of the hospital (it’s the older side of the facility) and the smell of any industrial detergent in bed linens/towels/hospital gowns. Instant nausea and anxiety. Sometimes spontaneous vomiting. You’d think after 30 years it would’ve gone away...
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Lula, isn't that an intense and anxiety provoking trigger; the smell. It's the SMELL of a hospital that gets under my skin. Or 4 people jammed in a room with nothing but curtains to separate and contain. Privacy and space are supremely important to me and when I am at my worst, sick in a hospital, the LAST thing I want is to be warehoused with 3 other people who are also at their worst, with no nurse in sight unless one of us pounds on that buzzer for 20 minutes. Yup .... the smell of a hospital makes me gag. Those limp, drab coloured woven blankets that are too small and too flimsy to be any use. AAGGGHGHG!
Docotrs know shockingly little about the drugs they prescribe. I always talk to my pharmacist if I want the Who's Who about drugs.
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VL22- there was a discussion that related to timing of SEs on another thread the other day. I’ve copied & pasted the relevant parts for you below. Also, I totally get what you mean by not knowing if a new symptom is related to SEs from a med or something else. I can tell you that the ear pain/tingling that’s also in jaw and cheek may very well be related to allergies. Seasonal allergies have it us really hard the last year or so. On the advice of our dr we’ve added Flonase to our allergy season medicine regimen vs just antihistamine pills like Claritin. Additionally, a few years ago they changed the decongestant in many of the OTC cold/allergy meds to one that’s not as effective and in some cases (like NyQuil) just removes the ingredient and didntbtepkace it with an alternative. So if your traditional go to meds don’t seem to be cutting it like they used to, that may be the reason. You can’t still get the other decongestant but you have to get it at the pharmacy counter and present your ID to purchase.
Back to the SE timing discussion:
Steady state is reached with tamoxifen after 3 months of therapy taking 20mg once a day for all 90 days. If the half life of tamoxifen is 5-7 days (let's just say 6 days), that means every dose reduces by half every 6 days or another way to look at it is that it reduces by 8.3% each day. When you calculate this out, it means 20mg tamoxifen taken for just 10 days takes an additional 30+ days to be fully out of your system. The longer you're on it the longer it will take to clear. This explains why SEs can sometimes get worse over time and/or suddenly appear months after starting it-the concentration of the drug increases in your system everyday. It also explains why SEs can linger well beyond discontinuing tamoxifen as there is still plenty in your system that's going to take a long time to clear
Hope this helps! Feel free to ask for additional clarification if needed. 🙂
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Lula and Rosabella - thanks so much for the information!
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I think the idea that not posting about your bad time on tamoxifen or AIs = having no problem with the drug, is dead wrong. That is an assumptive leap that points to a potentially WRONG conclusion. It is misleading. It is not supported.
It may be that MILLIONS of women feel like death taking these drugs. But they just don't post about it. For whatever reason. They are not members here, they do not post. So if one million miserable feeling women are walking around North America like aching, cramping, hot flashing, balding zombies, but not posting, is it correct to say that 'many' women sail right through these drugs without a backward glance? Uh ...no. There is NO evidence to support that. LACK of evidence is NOT evidence. Voices we DO NOT hear cannot be counted as women 'having no problem'. Because we just don't know.
We are a membership of 205,000. In 2018 another 266,000 women are expected to be diagnosed with breast cancer. If they DO NOT show up to post here, can we conclude that they DO NOT have breast cancer? Because they don't come here to talk about it? No, we cannot. Having a problem (cancer / side effects) is not removed or gone just because you don't show up here to 'complain' about it.
Millions of women MAY HAVE A LOUSY TIME taking (the drugs). Their LACK of posting cannot and does not mean that side effects affect only the minority. I even take issue with the word 'side' effects. These are THE EFFECTS of denying the body hormones. These are not 'side' at all! The intention is to block hormones and this is a HUGE thing to a body and these effects ought to surprise no one, least of all our doctors!
So. This drug has effects. Not talking about them DOES NOT MEAN they are not happening. A woman's silence on this issue CANNOT be called 'having no problems'. Those who show up here to post about it may simply be more vocal and chatty, more computer savvy, less willing to accept the status quo. But to say we are in the minority for having problems? There is not one shred of evidence to support that.
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How does an individual know what their "personal risks for mets" is? Is it the genetic testing I turned down? At the time, it sounded like a $4000 scam that maybe my insurance would cover, maybe not. Since the only people in my family known to have gotten any type of cancer were distant AND elderly, I turned it down. My MO considered it irresponsible since I have a daughter, but my thinking was that if anyone were to have genetic testing done, it should be her - I already KNOW I am high risk - ha! - Monday Morning Quarterback.
So am I missing something regarding the calculation of one's personal risk for mets? Is it a lifestyle/diet and cancer stage/node involvement or is it genetic testing?
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Runor, we need a Facebook "like" button for your post.
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Lulu & Runor - OH. THE. SMELL. Once I step off the elevator I can smell the chemo chemicals, and the strange 'human' smell reacting to it. I had always wanted to volunteer in the chemo area as a helper....a way of giving back. I can't yet. the smell makes my nerves jangle and I'm left feeling right back at ground zero. I feel emotionally choked up and cannot wait to get my appointment over and get out. It's not the people or their sad stories that keeps me away, it's THE SMELL.
The sounds - Intercom announcements in that soft voice that you have to strain to hear, the phone buzzing, the sound of gurneys hitting the doors, the whirring sound of computers and imaging equipment....all again put me in a bad place. It all makes sense. The memory area of the brain is hardwired to the sight, smell and hearing portion of the brain. PSTD...oh yeah, I don't have a doubt.
Runor - Couldn't agree with you more on the SE points. I don't suffer much anymore because of my exercise regime, but I know for a fact that when I break from it, it all comes creeping back. I estimate my SEs at a hard medium without my program....and they were miserable and affected my QOA in a big way. I don't post about them because for now they're pretty much gone....but oh boy, yes they exist! I'm with you, I highly doubt we are a minority.
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GoKale, there are online risk calculators that you can punch your data into and they give you different numbers for survival and prognosis and I'm probably using those words wrong. They are interesting, or terrifying and depressing, depending on you mood at the time.
But I think the $4000 test you are referring to is the Onctotype test. It is worth your time to read up on it and see what it tells you. But in many cases it determines whether chemo would help or not. High number and you have a more aggressive cancer that grows and divides quickly and you will likely benefit from chemo. In my case my score was low, 11. Chemo would not do me one lick of good. I have a slow cancer and the plan is to starve it out by denying it the female hormones it needs to grow. This is bad for me, being a female who makes female hormones and all that.
I was both relieved and freaked out over no chemo. As I see it we only have a few bullets in the gun to shoot this bastard cancer with: surgery, radiation, hormone blockers, chemo. That's 4 bullets. One of my bullets was taken away. I hope to kill him with only the three shots I have left. Surgery, radiation and tamoxifen (for 5 years). Chemo is such a brutal thing and I am so amazed by the women who power through it. So part of me was glad no chemo, but part of me felt a little unprotected too.
I do not know if Oncotype tells you how at risk your daughter might be. I don't think it does, but I might be wrong about that.
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rumor-so true on both posts. I hate to say it, but everyone complains about drug reps and how they push the cost of drugs up, and they get the dr to write more expensive drugs instead of the cheaper generics. The reality is, todays Medicine is all about productivity and profitability first and healthcare second. How many patients they saw and how many ICD-10 codes they can charge for. In the US there has been a huge “takeover” of independent medical practices by big institutions. And it’s all about negotiating power over reimbursement. The bigger the group the higher the reimbursement for the exact same services. Many independent docs were ok with this while acknowledging it wasn’t fair but they got to keep their independence and didn’t have to deal with institution bureaucracy. Then Medicare issued a mandate: switch over to electronic medical records for filing claims or be penalized 50% of the reimbursement. Electronic medical record software alone is $$$$$ not to mention the equipment to go with it. Many practices agreed to join the larger institutions at that points of they didn’t bear the brunt of the EMR outlay. They were almost always promised that nothing would change in their practice except for addition of EMR, billing Office and who signs the paychecks. Biggest lie ever. The docs are being monitored everyday and if someone in the institution ivory tower decides the doc isnt seeing enough patients or he’s not billing enough codes/levels pressure to do so is put on that dr. That pressure negatively impacts care.
The big institutions aren’t typically friendly to drug reps - they interfere With productivity. With the increased productivity demand the dr doesn't have a lot of time to find out about newer therapies, side effects/effects of medications. For many docs meeting with a drug rep to get the skinny on a new product or a new Indictation or how to even use/dose the medication and get it covered is/was a valuable time of learning and staying on top of things. Why don't docs know how a med works and the side effects? Because they 1) don't have much time anymore as a corporate suit is riding them to see more patients. 2) the quick source of information they had thru a drug rep is blocked. That leaves google...and they're upset when we come in knowing more than them (from using google), the supposed expert. Advertising meds like Ibrance, Keytruda, Neulasta, etc on tv to consumers is the default to helping keep docs aware of these medications. If a patient asks, the doc is going to have to go look it up and at least get some basic information on it. While everyone likes to complain about newer meds and they cost more than a generic that does the same thing...what they often don't realize is the newer one often is safer, more convenient, or has more tolerable/fewer side effects. We see it all the time in this board right here...brand name tamoxifen and Teva brand seem to have fewer side effects. In the diabetes world metformin is first line treatment. Generic versions cost $4-10for 30 days supply. Brand name is about $35 for a months supply. Generic is known for horrible tummy upset, acid reflux, nausea, frequentgas, gas that smells worse than normal, and lots of diarrhea. The brand name not so much. Is an extra $25-31 a month worth not having diarrhea every single day? (In case you didn’t know, the answer is yes). But again, most docs don't know that and insist it's not any different because they don't know any better. A drug rep could've told them that and showed them the studies to back it up. Next time you see a drug rep in a dr office, see them as a helper not an evil entity and thank them for keeping your doc up to date so you can get the best care possible.
Bottom line you've got to be your best advocate. Don't be afraid to hold your ground and bring up the knowledge you know from personal experience and what you read from credible sources like BCO, tv/print ads. Docs of today are NOT all knowing and when they don't know something they tend to brush it off unless it's life threatening. If we don't hold them accountable in staying up to date with info anyone can pull from online, who will?
It is true that people who are experiencing side effects/effects tend to be more vocal about it than those who aren't. BUT there are thousands who just take their meds as prescribed and live with the SEs because they feel they have to just suck it up, thousands who only vent with their friends about it or in live support group sessions because they don't know BCO and sites like it exist (I'm pretty internet savvy and didn't realize these forums existed until months after diagnosis and after bmx w/DIEP flap was complete). Yes there are thousands getting along just fine with few to no significant side effects, but there are thousands more we don't hear from that are absolutely miserable from taking the anti-hormonals.
Ok I'm off my soap box. 🙂
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Lula - oh no you don’t...stay put on that soapbox...we need you there! Your input is spot on and highly appreciated by me, and I’m sure many others. I have a new MO that not only brushes off my concerns but visibly gets impatient (after just 2 simple questions) He offers no further details which makes me wonder if he has a clue sometimes. After reading your post a few of the pieces came together on my puzzle. My NP, total opposite thankfully! I’ve been pondering a change in MO, and I think I’ll go that way....cross your fingers I find one that holds themselves accountable and open to what I bring to the table. Time to put on my advocate hat
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I have a question for anyone who has advice on this....I am 5 years out from breast cancer, I was taking tamoxifen and the side affects weren't too terrible, and I finally decided to have a hysterectomy, and my oncologist said I don't need to take tamoxifen anymore, and my OB/GYN said it was up to me. I have been experiencing more side affects from the tamoxifen, namely dizziness and I would like to stop taking it, but I am fearful. It was like when I stopped chemo, I was thrilled to be done, but fearful because to me it provided a sense of security, and I am sure that is what is happening now. Can anyone share any experirences or thoughts on this? I would greatly appreciate it.
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Vamp, I agree. Your triage nurse sounds a little off. I would demand two statements straight from your oncologist's mouth right now:
1. Should you discontinue Tamoxifen ASAP while treating your clots and talk alternatives later;
2. Do you need an additional blood thinner.
While on T I got an apical clot in my heart. I was told by the cardiologist to discontinue T immediately. Oncologist agreed. I was getting those shots to the stomach (ouch!) and then was put on Xerelto (sp?). When the clot resolved, I was put on baby aspirin. I cannot take T again. Same as my sister in law who got clots in her leg from the BC pill. No more BC pill for her.
I follow this thread and was worried about a clot with you. I didn't chime in because the other ladies already had you! Thank goodness for the boards. Glad you are okay
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HapB, my oncologist told me the incidence was similar to the birth control pill. Someone more knowledgeable needs to take this one.
Will say I have damage to my heart from chemo, so the combo of that and T worked against me.
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HapB, it is the gift that keeps on giving, eh?
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like i said, each individual needs to do what they feels right for them considering their risks to progress. No one is saying DO IT!! Ses are possible with any drug. That's a fact. When checking on drug ses, any drug, look for common ses. Some sites break it down to common v not common. Decide for yourself. Read the good bad and ugly for ANY med you take. T and AIs are a choice and who knows if it'll work for you, but not all drugs are a choice if. Many are truly life saving. I hate drug companies too with their over pricing rip off money making schemes but it is what it is until maybe some day something can be done about it. But unfortunately we live in a money grubbing society here but I keep the hope for future generations.
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hapb, theres a test you can take to see your risk. Worth bringing it up to your mo imo. Also good tips on reducing risk.
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HoneyBadger, thank you.
I caught my first cold of the year, can't remember the last one I had it's been that long... or maybe my memory is just that bad. I suppose it's possible I am developing allergies? No fun when you can't breath that well already.
Anyone heard anything about pH levels in our body in regards to cancer? My neighbour was trying to tell me something about making sure it's where it should be, but not sure what the point is.
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kytylove--Ask your doctor to give you the Breast Cancer Index test. It will tell you if you will get any benefit from continuing Tamoxifen. Mine came back High Risk for Recurrence but Low Benefit for Continuing which is the result for only about 10% of us. I chose to stop the med. My High Risk is on the very low end of the scale so I'm not too worried. I exercise and diet and take supplements that I think will help prevent recurrence. And I figure why risk blood clots and cataracts (I had a total hysterectomy so I don't have to worry about endometrial cancer) if I'm getting no benefit from 5 more years on Tamoxifen. The BCI test may give you that peace of mind you are looking for.
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I’ve been off the boards for a few days... end of the school year is nearing which means I had 2 shows on Saturday, new light board being delivered, band concert in a few weeks, another show this weekend.... I’m exhausted just thinking about it all.
But I’m back to beg for some help. I have NEVER had leg cramps like I am getting now. I mean, standing and stretching doesn’t help. And tonight, I had it first in left leg then when that calmed a bit I got it in the right. This thing goes from toes to butt. What can I do? (Don’t say bananas, I had 2 this morning and I tend to get them pretty regularly) HELP!
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Ladies, I would love to spend a few hours with each of you. I find two sites that are worth their weight in gold, Thy-ca.org for Thyroid Cancer and this site for Breast Cancer. All of you initiate intelligent conversations that are so thought provoking and insightful.
Runor- I have to agree about the issue with incomplete data. No one told me about the Thyroid Cancer site. It took me two or three years post surgery to find the site and then time lurking about to figure out how little information my doctors shared. There are people on that site who have worked for the NIH and have links to research on how replacement hormones work. I have learned more through reading the material they share than three Endocrinologists ever gave me. With my diagnosis of Breast Cancer, no one shared one word about this site either. I searched online and found this site. Again I lurked around trying to see what was being shared. I am retired, I know how to find abstracts and I read all kinds of studies. I KNOW from my own experience that there are many women out there who are barely holding their heads above water with their diagnoses, treatments families and employment. They don't have the time or energy to find or even realize how a site like this could help them deal with the medical train we find ourselves on.
Egads- We've talked about all of us needing to find something humorous in our daily lives. The big "C" can take over your life if you can't pull away from it for a good laugh & a walk in fresh air.
Lula- your thoughts on Big Pharma are spot on. Curiously after your info mentioning metformin and it's side effects, I realized that about the time the doctor took me off the generic form, I stopped having both acid reflux and a constant stomach issue.
Well, My contribution tonight relates to another big business, Insurance! I just had the most fun! My phone rang with a call from a United Healthcare Pharmacist re my medications on their plan D. The purpose supposedly an attempt once a year to review my meds. He wanted to know things like how I kept track of my meds. I told him about my clutches with daily pill containers. The Pharmacist read back to me the list of Prescriptions I take and asked if I took any supplements. Type A, anal me, pulled out my spread sheet complete with meds, dosage, Prescribing Dr, time of day to be taken, etc. I shared that I use an app called Epocrates to track any potential interactions with med changes. I told him that when I changed from private insurance to Medicare part D, the changes that were recommended in my meds increased the possibility of interactions. Six for one med alone. I think that surprised him. I also told him that I was opposed to any mail order RX service that left my medications in a mailbox with 80-90 temps. That at least 7 of my meds cautioned they were not to be kept at temps above 76 degrees for longer than 30 minutes to an hour and I didn't plan on sitting at my mailbox waiting for them. Why was it fun??? It was fun because I'm pretty sure the whole purpose of the call was to get me to have my meds delivered from an on-line pharmacy to my mailbox at a cheaper price for the insurance company. And, I'm finding thatacting like an annoying Senior Citizen is fun for me! By the way, his mailbox is hotter than mine-he lives in Miami!
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Vamp - I did some digging into the whole PH thing a while back, seems like a trend I’m not particularly big on. The Mayo clinic only states that more research is needed. If you’re interested here’s a little breakdown on it from one of the sites I regularly follow:
https://www.marksdailyapple.com/does-dietary-acidbase-balance-matter/
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kytylove- did your doc order an oncityoe or msmmsprint score of your tumor? Those are other pieces of this puzzle that can help. The most current data is suggesting 7-10 years of anti-hormone therapy. Having your ovaries out does significantly decreases the amount of estrogen your body was producing (by about 80%). However that other 20% (which now has become your new 100%) is still being produced through the aromatization in your body’s fat cells of androgens released by your adrenal glands. Aromatase inhibitors specifically target that process and shut it down. The data shows that AIs are more effective than tamoxifen. The challenge is that you can’t use AIs in premenopausal women unless they have ovaries removed or shut down with a medication like Lupron. Tamoxifen would continue to block the estrogen that is resulting from the aromatization process from being able to interact with estrogen receptors in target tissues. So you have 3 options: continue tamoxifen, trade out tamoxifen for an aromatase inhibitor, or choose to go ahead and stop anti-hormone treatment at the 5 year mark. I hope this helps!
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